A Result, an Update, and a Plan.

Tuesday, October 14th, 2014. 29w5d.

I know many of you have been waiting to hear the results of the amniocentesis that was done last week, to determine if the virus I have has crossed the placenta and possibly infected baby girl. I appreciate your kind words, thoughts, prayers, happy vibes, good juju, and manic stalking more than you can ever know. 🙂

Our results came in earlier than expected – Friday afternoon, actually. I do apologize that I kept some of you waiting, but before telling the whole world, we wanted to meet with doctors and gather some semblance of a plan.

I do hate blind results with no next steps in place…

*****

The amnio results were positive for CMV. This means that the virus has crossed my placenta, and is currently in the baby’s blood stream. Her urine, which is basically the amniotic fluid that was tested, is showing that she is shedding the virus.

I have it, she has it – and now what does that mean?

What this means is that we now have a higher chance for baby girl to be affected by the virus in utero, at birth, or beyond. This could be in the form of mild central nervous system issues such as learning delays or mild hearing or vision loss, or more severe issues such as blindness, deafness, and mental retardation.

What this also means is that there is no real way to know if she will actually suffer any effects from the virus… There is just no way to be sure, aside from time and watching her carefully as she grows. She could be perfect at birth and develop issues later, or she could just be perfectly healthy and grow up a normal, healthy, crazy kid.

At the moment, the ultrasounds are not showing anything greatly concerning, which the doctors say is encouraging. They do say, however, that sometimes just because something is growing and looks appropriate via ultrasound does not always mean that it will function exactly the way it should. We just can’t know what the future holds for this little one based on all of the data we have today.

The not knowing is excruciating. It takes me back to the darkest days of infertility and not knowing if I’d ever be a mother. This is different though, because there is an actual life, not a vision of a life, in the balance.

This is my child. The one I feel kicking and squirming all day long. This life is real and tangible, and in true danger of suffering anything from zero to mild to severe issues throughout her life due to a virus I couldn’t protect myself from, and could never have seen coming.

And so now, despite advice from my previous doctors to just wait it out, we push forward. I’ve never been one to just “let things be”…

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My new doctor has recommended a two-pronged plan of attack on this virus, and the husband and I are fully on board.

She recommends a very high dosage of an oral anti-viral for me, to work on killing the virus that is in my system currently, and hopefully be some benefit to the baby as well.

She also recommends the “experimental” treatment I had mentioned previously, an immnoglobulin infusion, to be done once per month as soon as we can start. Likely I would only be able to do the treatment twice before delivery considering how far along I am at this point – most women find out they are CMV positive much earlier in pregnancy than I did – but the doctor did say that despite the lateness of the treatment, she still sees the benefit in pursuing it.

So what is our time frame exactly?

We don’t know quite yet. The one caveat in our treatment plan is that the immunoglobulin treatment is not something that is readily covered by insurance, and my doctor and her staff will have to fill out form after form, appeal after appeal, and plead with the insurance company to understand the necessity of paying for something that is not FDA approved for this use.

And paying for something so ungodly expensive.

These treatments, out of pocket, regularly cost around $20,000 each. And I’m to have two. Maybe three.

TWENTY THOUSAND DOLLARS. PER TREATMENT.

I almost laughed, just because we somehow, by the grace of God, avoided having to pursue IVF at that cost… and now this?

The irony is there. I see it. It would almost be funny if it wasn’t so horrifying.

So despite having a plan in place, we wait yet again, this time on the insurance company and the amazing staff at University of Michigan’s Fetal Diagnostics Department.

May the odds be ever in their – and our – favor.

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And so that’s where we are.

Waiting.

Hopefully only for another couple of days… I’m told that we can move forward with treatment as soon as we have some kind of go-ahead from insurance, and from there, we hope and pray that the antivirals for me help kill off the virus, and that the immunoglobulin infusion treatment for baby helps boost her immune system so it can fight off any damage the virus could be causing to her system.

And still, we pray for the miracle that despite the virus, baby girl fights and stays strong and is born perfectly healthy.

I think that’s what every mother hopes for their child, but it’s a very real concern for me at the moment.

If you’re the type to send up a prayer, happy thought, or positive energy of any kind, please think of both the doctors who will be appealing our case to the insurance company, and doctors who work for the insurance company to have compassion for our situation.

Financially, this could be a huge blow, but considering there is no other choice but to do nothing, we will accept what we need to do to give our baby girl her best possible chance at a happy, healthy life.

…Even if she does have to sleep in a drawer.

*****

Again, thank you to everyone who has reached out with positive thoughts, success stories, caring words, and real and virtual hugs.

You all are keeping us afloat, and we will need you even more in the coming days, weeks, and months.

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20 comments on “A Result, an Update, and a Plan.”

Sending you big huge prayers! I go to U of M and love the doctors af MFM, they’re amazing, you’re in great hands! The struggles you endured will pay off in the end, your baby will be perfect, regardless of this outcome, because she is your baby.

I’m just shocked. Why does it seem that people who struggle to get pregnant also have a disproportionately high amount of pregnancy complications? If life was fair… but it’s not fair. No sense in dwelling on that but these are my thoughts. I am praying for baby girl. XOXO

Tracy — thinking SO MUCH of you and that baby girl and sending as many positive thoughts as I can muster your way. I’m glad you got an answer quickly, despite it being the answer you weren’t hoping for, and that there is a treatment plan in place. Thinking good thoughts for this week and beyond!

I am so incredibly sorry you are facing such terrifying health concerns for your little one. Wishing you all the best and hoping your insurance comes through for you. If not, have you thought about starting a kickstart fundraiser? It might be worth trying.

Oh honey I was so hoping for a different result for you. I’ll keep your family in our prayers. Whatever God’s plan is for you and your little one, just remember that you’re not alone. You have an entire community rooting for you and you will get through whatever hurdles are ahead of you. I’m sure you’re already cherishing the experience of being pregnant which is more than some ladies have been able to accomplish. Try as much as you can to focus on the aspects you can be thankful for since I’m sure the worry is sometimes all-consuming, especially the aspects you can’t control.

I’m so sorry. Sending lots of prayers your way. One suggestion, IVIG is usually covered by insurance if it’s medically necessary. I think you have a strong case for coverage but not sure about your medical benefits. Hope everything works out okay in the end!

I was hoping that you would have different news today, but this sounds like a good plan. Like you, I would not be able to just stand by. I will send all kinds of YES WE WILL PAY FOR THIS TREATMENT thoughts your way and I hope you get some good news from your insurance company soon!

oh my gosh….I’m still stuck on the $20K per treatment. This all seems so cruel. It’s really appalling how much you’re expected to pay so that you can try to have a healthy baby. Oh hun, I’m really sorry you’re faced with these decisions. You’ve been through so much to be where you’re at. We’re not faced with the same challenges, but I’ve always felt that I’ve gotten SO far, did the time, spent the money on IVF….I couldn’t bare it if some thing happens now. It’s just so different when you’ve gone through Infertility & then Fertility treatments.
I wish nothing but the very, very best for your baby. I hope she will be healthy through & through.
You seem so level headed – its unreal. I really admire how you’re handling all of this. I hope you get peace soon. I hope that baby’s born healthy & continues to remain healthy – and beats the odds!

I’m sorry if you’ve mentioned this already, but what are the odds that she’s born & there are no complications – immediate & future??

Shit. I am so sorry Tracy. The test result is one thing, but then to find out that you may not be able to have access to the treatment? That’s unimaginable.

I will be thinking of those doctors at your insurance company and hoping they see the reason of a semi expensive (medically speaking) treatment now vs the potential of much higher medical bills down the line (hopefully not but they need to see that reasoning).

Thinking of you guys and sending strength, positivity and love. So much love.

Oh sugars! I am so sorry to read this but I know that God is the ultimate healer and He can and will do the impossible for you and your baby girl. I’m praying for complete healing of her body and your body. I’m praying that God will open up doors for your finances so that you won’t be burdened with medical costs. My friend had this very same thing happen to her. The doctors even tried to get her to abort because it just looked “too bad.” But she prayed, read healing scriptures out loud while rubbing her belly, had others lay hands on her belly and pray, etc. Her son is now five years old and does have to wear a hearing aide but other than that, he is perfectly healthy.

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I'm Tracy. I'm a thirty-something, happily married miscarriage survivor, who tried just about everything possible to conceive for over five years, is currently parenting our miracle baby girl, and blogging about the hilarity of it all.

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A safe space where I discuss the racing thoughts in my head, personal struggles, and day-to-day activities while struggling with mental health and mood disorder issues. My personal goal is to reduce the stigma that comes with mental health and mood disorders, by talking more about it.